Appointments, Appointments

The ‘nanny’ I hired over the summer sucks. I’d fire her, but we have only this week and next with her yet before she moves back to college for the school year. I’m home currently, in our office, while they are playing hide and seek. The girls can’t find her so they are in bothering me to help them look for her. I know she is in one of their bedrooms, and thus can hear them bothering me. Wouldn’t you just come out to prevent the mom from being bugged? Clearly she doesn’t understand why she was hired. And honestly, for two weeks, I don’t have the energy to train her.

Nora’s tutoring is going well. They are on lesson 7 of 12 of the Foundation in Sounds program. I was afraid at first Nora wasn’t catching on, but she must be now. I’m excited for her to realize her own progress! Hopefully a boost in her self-esteem.

Last week was Nora’s first play-therapy session, and our next is this Thursday. Hard to say after only one visit, but as we walked out Nora said she loved the woman. So that’s a good sign. The only downfall is that the woman is a 35 minute drive each way, I know, nothing to you who live in bigger cities, but that’s 35 miles to us, and only sees patients during the day, so for most of our coming sessions I’ll be taking Nora out of school, and hopefully not Nadia too based on driving and school pick-up times. I know school is very important, but I think this play-therapy could help Nora a lot, so it’s important too in my mind.

I had an appointment with Nadia’s doctor in Minneapolis last week, over tele-medicine, of course. We are going to focus back on the basics, mainly healthy eating, so gluten-free for sure, and hopefully dairy-free in the future. We did cut out some supplements to maybe add back in when Nadia’s gut is healed. And we switched to some combined supplements so I don’t have to give so many different items each morning and night. We are doing okay gluten-free. I don’t purposely give her anything with gluten, but sometimes I mess up. I have no idea how to eat out, so everything so far I’ve made at home lately. Which is so hard coming from a family who ate out maybe half the nights before COVID shut down the world. Of course I haven’t seen any improvement in Nadia yet, I realize it’s too soon. But her anger issues are just AWFUL! So awful that I emailed the child psychiatrist Nadia sees at the University of Iowa and made an appointment for August 18th to talk. I don’t love her on medicine, so my fear is they will want to add in another… Ugh. They seem to love medication. She is so young for medicine in my mind. I worry how it will affect her growing brain long-term. Honestly, that is my biggest worry right now.

Haircuts, Tutoring & Gluten-Free

Finally got the girls’ hair cut. Tangles were seriously getting the best of us on a daily basis. One night after baths I considered just cutting off the tangles myself… They cut around five inches each. So much easier to handle!!

Nora and her tutor are slowly progressing. The original plan was to start on the Barton Reading program, but Nora didn’t pass the third section of their screening. So instead we need to complete the Foundation in Sounds program first. I swear they were on lesson one, which teaches the sounds for m and n, forever. But today she finally got to move onto lesson two, which I believe is the sounds for v and f. Slowly but surely I guess. The more review the better, but of course I’m anxious to see progress. I actually own both of these programs, but getting Nora to sit down with me and learn feels darn near impossible. But with this tutor she is excited to meet. So that’s a blessing.

This particular tutor has been a teacher for over thirty years, so quite a bit of experience. And while she has no medical background, and thus can not diagnosis any conditions, she mentioned some things to me last week… She sees a lot of ADHD symptoms in Nora. This was actually a little shocking to me, as school has never mentioned such. So of course I started researching… I highlighted the ones that apply to Nora from my perspective. I have no idea if these are enough symptoms to qualify for such a diagnosis, or who even handles this sort of thing. We have that learning disabilities evaluation in November, but that seems so long from now. And even if she does have ADHD, then what? Medication with tons of side effects? That doesn’t sound very fun. My further research pointed me right back to square one… remove gluten from the child’s diet. And dairy, and soy, and sugar. So everything. Okay, sorry, I’m being snippy. But Nora is so picky already. I was doing kind of good with cutting gluten, but lately I’ve gotten more lax, ya know, because it’s really hard, and takes time to cook everything at home, from scratch. But I guess I need to be better at this.

This morning I was feeling a little ambitious and made these gluten-free blueberry muffins. I honestly thought they were quite tasty. Nadia tried them, said they were gross. And Nora refused to try them. And this is why gluten-free feels so hard. So much time and food is wasted. And then I panic and need to feed them and go back to something that is horrible for them. Dinner tonight is supposed to be this chicken and rice casserole I found online. Although I’ll be using dairy, so butter and regular cheese. Which I probably shouldn’t be, but… Anyway, I have a strange feeling they won’t eat it, won’t want it all mixed together. I’ll try to think positive. Am I making meals too complicated? I mean, there are so many meals to make. They can’t have plain chicken, or salmon for every single meal. And they don’t do veggies all that well. Ugh, motherhood.

Gluten-Free Dinners

Does anyone have gluten-free dinner ideas that EXTREMELY PICKY kids will eat? I’m thinking spaghetti tonight, as gluten-free pasta is easy, although I still haven’t found a brand I totally love. And I have tried a lot. The garlic bread I’d normally serve with it though will be harder. I had a few favorite gluten-free breads I think are good, but they are all just sandwich bread. I could try to make a garlic topping… Any ideas?

Food Fails

I’m seriously failing when it comes to feeding my children. I mean yes, they are fed, they are growing, no concerns there. But they are not eating healthy. And we’re supposed to be cutting out gluten and dairy, and they have definitely been eating plenty of both. Not celiac, but still. Everyone tells me children won’t starve themselves. Give them healthy food and they will eat. But I’m convinced this isn’t the case with Nora. I think her issue is more than picky eating, as she is still spitting out quite a bit of chewed food. I’m so frustrated. Meals feel too overwhelming for me lately.

Nora’s special education evaluation meeting is finally scheduled. For the second to last day of school, which is May 19th. I don’t know what was determined, meaning, I don’t know if she actually qualifies for special education services yet or not. That is what will be discussed during the meeting. Why couldn’t they just send me a report to review, instead of making me wait weeks??

Ten days of school left…

Fever

Nadia has been waking up the past few nights, which I thought was odd, as she had been sleeping sooooo well. Last night she fell asleep in her bed before I could even say goodnight. And then woke around 11pm with a fever. And a cough. And a stuffy nose. Hopefully it’s nothing. Nora was very upset she had to go to school and Nadia got to stay home. I assured Nora we wouldn’t have any fun without her today, LOL.

Remember how Nadia was going to join Nora’s gymnastics class starting next week? Well, got an email this morning that since Nora is now seven she can move up to the next class level. Great. How will I tell them they won’t be together in class after all?! They were looking so forward to it…

And there is snow on the ground today. Not a lot, but enough. I was so hoping spring was just around the corner, but it seems living in Iowa is always full of fun weather surprises.

I’m running out of ideas for what to feed the girls. Seriously, if I take out gluten and dairy, what the heck is left? Lately we have been doing a lot of organic non-GMO no sugar added applesauce, grass fed beef sticks, some random gluten-free snack bars… but that’s only snacks. And it seems they eat the same snacks over and over and over. How much variety do you feed your children? Thinking of meals they will actually eat is so overwhelming to me. Last night was a complete fail. Nora had gymnastics until 6:30pm so on the way home I picked up McDonalds. Awful. Eating that crap at 7pm and then going to bed, ugh. And I don’t really want to drag Nadia to the grocery store sick today… I admit, I’m really awful with planning ahead, or meal planning in general. There should be a class to teach me! I know there are tons of books out there, but most of the meals they use for examples in those books aren’t things my girls will eat. Does anyone use a fun app that actually makes the planning easier? I’ve tried a few, but never stuck with them. Help!

Four Doses…

Nadia has taken four doses so far of her antibiotic. And no change. And I know, it’s so early… and PANS can be complicated to fix. But I’m obviously frustrated as her behavior continues to drive me freaking crazy! I guess a small part of me wants to know we are on the right track. And really, who doesn’t want a quick fix. Although I’ve been told time and time again that getting a PANS kid feeling better is not quick.

Nadia has so many symptoms, but lately she is complaining more and more about being itchy all over, and sometimes she will have a meltdown while screaming, I’m so hot! I’ve asked around in the Facebook support groups I’ve joined and everyone tells me mast cell activation, which is something to do with allergies and histamine, I’ll have to research further. We are supposed to be cutting gluten from her diet, and I guess also cut high-histamine foods. I will do these… but it’s overwhelming all at once. This weekend I need to look up some gluten-free recipes and figure out some snacks she likes. Also, for allergy, we’ve been doing Xyzal, but last night and this morning we gave her Allegra to see if that makes any difference in her itchy complaints. I’m not sure how long we’d need to stay on Allegra to know if it’s better for Nadia. To me, since the medications wear off so fast, like how she needs to take them every 12 hours, we should know quickly… but maybe that’s not how this all works in the body…

Our telephone follow-up with Dr. Standing is Tuesday morning. I know we will go over test results and I assume discuss if the medications are working at all. I’ve seen a few tests results so far, and everything has been normal, I think. One of her titers, I think tetanus, looked high, but I’m not sure if it’s high enough to matter. And her total compliment was low, but again, not sure if it’s low enough to matter…

I’m just so overwhelmed with all the information being thrown at me. Every time I ask a question in the Facebook support groups, I’m told 15+ more things I should probably check into. Some people say look for mold exposure, another person told me there is only one lab in the country that accurately diagnoses Lyme. I think Nadia’s Lyme came back negative, but I also think it’s the test people say isn’t reliable.

Please God, I pray Nadia starts to feel better, and that we get some answers from her test results and thus a path to healing.